FORCE-FACING OUR RISK OF CANCER EMPOWERED

Many Mutations. Many Cancers. One Community.

aka FORCE   |   Tampa, FL   |  www.facingourrisk.org

Mission

FORCE improves the lives of the millions of individuals and families facing hereditary breast, ovarian, pancreatic, prostate, colorectal and endometrial cancers. Our community includes people with a BRCA, ATM, PALB2, CHEK2, PTEN, or other inherited gene mutation and those diagnosed with Lynch syndrome. We accomplish this through our education, support, advocacy and research efforts. We are dedicated to providing up-to-date, expert-reviewed information and resources that help people make informed medical decisions. Our strong, supportive community of peers and professionals ensures no one must face hereditary cancer alone. FORCE serves as a champion, unifying the community and advocating for awareness, access to care, and better treatment and prevention options.

Ruling year info

1999

Chief Executive Officer

Ms. Barbara Pfeiffer

Executive Director

Sue Friedman

Main address

16057 Tampa Palms Blvd W #373

Tampa, FL 33647 USA

Show more contact info

EIN

65-0927702

NTEE code info

Cancer (G30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

As many as 90% of the millions of people who have a genetic mutation that causes or predisposes them to hereditary cancer are unaware of their risk. Not having this potentially life-saving information means that they are unaware of: • Important steps they can take to protect their health; • New targeted cancer treatments engineered specifically for people with inherited mutations; • Their unique needs, which are different from those affected by non-hereditary cancers, related to research, support, and treatment; • The risk their loved ones and future family members may also share; hereditary cancers affect current and future generations. FORCE advocates for this community and provides the information they need including educational materials, information on important research and clinical trials, peer to peer support.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Hereditary Cancer Library

FORCE empowers people to be active, informed participants in their care by providing education about every aspect of hereditary cancer. We CULTIVATE expertise from world leaders in cancer and genetics; CURATE the best of current content on hereditary cancer; and CREATE tools for people to explore and make sense of complex information and find resources otherwise difficult to access.

Population(s) Served
Adults

The largest international conference for people affected by hereditary cancer and the researchers , health care providers and organizations that serve the community.

Population(s) Served
Adults

FORCE developed our eXamining the Relevance of Articles for You (XRAY) program to evaluate reports of new breast cancer-related research. Funded by the CDC, XRAY will provide reviews and ratings of news media articles on breast cancer research to help breast cancer survivors better understand research that is relevant to them.

Population(s) Served
People with diseases and illnesses

Our free Peer Navigation Program connects cancer survivors, people at high risk and their caregivers to support and resources personalized for their situation. This program is for individuals who have just learned about their hereditary cancer risk as well as those who have known about it for many years.

Population(s) Served
People with diseases and illnesses

FORCE distributes thousands of brochures to healthcare providers, hospitals and individuals every year. View, print, or order copies of any of our brochures at facingourrisk.org/brochures.

Population(s) Served
Adults

The FORCE Research Advocate Program prepare members of our community to represent hereditary cancer perspectives in the research arena. This is the first program to ensure that the unique needs of the hereditary cancer community are considered in research design and
implementation.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of website pageviews

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Hereditary Cancer Library

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We expected a decrease in 2020-2021 as we launched a new site and pages are re-indexed.

Number of constituents receiving personal support through the Peer Navigation Program.

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Peer Navigation

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Number of individual constituents matched with a personal navigator for support.

Number of educational brochures distributed

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Free Brochure Distribution

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Free brochures. Given the pandemic, brochure usage has gone down in favor of electronic materials. Print materials are available but no longer measured.

Number of research advocates placed

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Research Advocate Program

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Number of trained advocates placed in cancer leadership roles with government-sponsored,academic, non-profits and industry partners.

Number of clients participating in support groups

This metric is no longer tracked.
Totals By Year
Related Program

Peer Navigation

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Constituents accessing ALL support programs including virtual groups, PNP, Helpline and message boards.

Number of clients participating in educational programs

This metric is no longer tracked.
Totals By Year
Related Program

Hereditary Cancer Library

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Constituents reading, watching and downloading information from our website portals, hereditary cancer library, webinars, and other educational videos.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

FORCE aims to accomplish the following:

• reach every person in the United States at high risk for, affected by, or concerned about hereditary cancer and provide them the resources and information that they need to live the best and healthiest lives possible.
• improve clinical outcomes through clinical research specific to hereditary breast and ovarian cancer.
• assure that every person in the US has access to the clinical services needed to learn if they are at high risk for hereditary cancer, lower their cancer risk, and live the best life possible after hereditary cancer.
• assure that policies regarding clinical research, legal protections, and access to health care take into account the specific needs and concerns of the hereditary cancer community.

Our strategies for achieving our mission are to focus our efforts on programs that fall within our four pillars: education and awareness, support, research, and advocacy and policy.

Our support programs include:

• FORCE Academy – Volunteer Training Program
• Face to Face & Virtual Support Groups
• One-to-One personalized Support
• Toll-Free Helpline

Our education and awareness programs include:

• Hereditary Cancer library
• Annual Conference
• XRAY: Behind the Headlines News and Research Summaries
• Personalized portals and decision guides

Our research programs include:

• Clinical Trial Matching Tool
• Research Recruitment
• FORCE Research Advocacy Training (FRAT) Program

FORCE has a staff of 13 individuals who provide effort to achieve these goals. Our staff includes a Chief Executive Officer, Executive Director, VP of Operations, VP of Volunteer Programs, VP of Marketing, VP of Education, VP of Advocacy and Community Affairs, Director of Development, Director of Outreach, Administrative Assistant, and Research Coordinator, and a National Helpline Director. We have over 300 trained volunteers who have completed our FORCEAcademy Training Program and who provide local support, media outreach and local awareness. We have an advisory board of 30 experts from several disciplines including oncology, genetics, psychology, gynecology, health policy, and fertility who review all educational materials. FORCE has almost 17 years of expertise serving the hereditary cancer community.

Our accomplishments include:

• Created a peer-to-peer support program to match people with trained volunteers facing similar issues.
• Awarded a 5-year CDC grant to 1) translate breast cancer research articles reported in the media into plain language reviews, 2) address healthcare disparities by improving digital health literacy among patients 3) improve breast cancer patient access to supportive services through healthcare provider education.
• Expanded our support programs to provide virtual support meetings.
• Launched a Spanish language webinar series and Spanish language information portal.

The things we have not accomplished so far:

• We continue to work to change health care policies in order to assure that every member of the community we serve has access to quality medical care as outlined by national guidelines.
• People are still dying of hereditary cancer. In many cases, this is due to lack of awareness about the signs of hereditary cancer, in other cases, it’s due to lack of access to medical technology that has been shown to improve outcomes, and in other cases, it is because the disease was too advanced or aggressive. Loss of lives can be mitigated by more awareness and education, better health policies and enforcement of existing health policies, and more research specific to hereditary cancer.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, Identify areas that are under resourced, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It's difficult to measure the impact of programs based on feedback surveys.

Financials

FORCE-FACING OUR RISK OF CANCER EMPOWERED
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

FORCE-FACING OUR RISK OF CANCER EMPOWERED

Board of directors
as of 03/12/2022
SOURCE: Self-reported by organization
Board co-chair

Carrie Catlin

Fenway Financial Advisors

Term: 2021 -


Board co-chair

Tara Freundlich

Morristown Medical Center

Term: 2019 -

Susan Friedman

FORCE: Facing Our Risk of Cancer Empowered

Carrie Catlin

Fenway Financial Advisors

Tara Freundlich

Morristown Medical Center

Debbie Denardi

Tammy Li

Denise Bulpitt

Dana Goldman

Wenora Johnson

Carmen Pace

Wenora Johnson

M. Margaret Snow

Liza Talusan

Matt Yurgelun

Laurie Spiegel

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 3/12/2022

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Sexual orientation
Decline to state
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 02/11/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.